What does your rheumatoid arthritis look like?

What does your rheumatoid arthritis look like? Recently I have been involved in a project that helps people with chronic disease (mostly diabetes) visualize and confront their disease. The organization is the ‘The Betes’ if you wish to look in on their activities you can at: http://thebetes.org/

‘The Betes’ uses theater, puppets and visualization to assist people in confronting their unseen chronic disease. For those who go through the process they gain a new understanding of their disease and the factors that influence their feelings about the disease. Confronting disease in this manner makes it real for most people who participate.

RA is a little different than diabetes. For one I have never met a person with RA who lives in denial. Instead we tend to fight for the diagnosis. We often confront RA even before our doctors think it is real.

This past week I met a person I used to work with. This person asked how I was doing. I replied I am getting along well, most days I get out for a walk and I am enjoying some activities. They said I looked great and remarked that since I am cured I can now go back to work. I was stymied. She looked at me and saw a 58 year old man walking upright and looking well. She didn’t see the hidden me, the man who cannot sleep most nights, the man who cannot get moving in the mornings, or the man who hurts so bad before his biologic treatments, that walking is a chore. In her instant glance she didn’t see me or my RA, she saw a vision of what I used to be.

I was very angry about her comment for a split second. I thought how can she not see me? But then I got over it. I realized I am judged like this every day. I am judged as cured when I walk into a store after parking in a handicapped spot. I am judged when I am late for a morning appointment. I am judged by my family when they see me and I look good or bad.

Why must we be judged? I do not know for certain. I wish I did. I cannot even say why I do not yell at the world every few steps, I am not cured. Not that I want the world to feel bad for me, but I am just hoping not to be judged for my actions.

So what does my RA look like? I would say it looks like judgement. It looks like stereotypes, and sometimes it looks like I am ‘cured’ (whatever that means). It is angry sometimes and sometimes it is meek like a wilted flower, hiding in the shadows and wanting to remain hidden. Many times it is red hot joints on a cold day or stumbling to move across the room when I have a flare. My RA is not one dimensional, and it cannot be summed up by how I look on any given day. It is a monster with 70 heads and 40 bodies; it is everywhere in my body and nowhere to be seen most days.

My RA is wrapped around my body and it squeezes my joints. RA holds me back and makes me tough enough to shrug off the looks I sometimes get. My RA sometimes makes me hide from others, causes me to be loud so I will be noticed, and gives me the drive to prove that disability still means able, just with physical limitations.

My RA makes me angry when people ask me to carry something and even more angry when they don’t. It causes me to laugh at the absurd and cry about the routine. It is a paradox, I wish I could control but know that I cannot.

My RA is part of me, sometimes it controls me, and a few times I have ignored it. When it gets out of hand, I am in bad shape. I treat it, suppress it, think about it, and anticipate when my body will change once again.

3. Confusing. Guess it is time to see a rheumatologist. I have sjorgren’s with osteo. My orthopedic surgeon says my pain is more like rheumatoid & sjorgren’s is a rheumatoid disease. I need to learn much more.

I am so sorry you are having this issue. You are correct that sjorgren’s disease is often treated by a Rheumatologist. While I do not have sjorgren’s I urge you to seek out the very best medical treatment available. I know at first when I was diagnosed with RA, I was very concerned, and I feel my life has been greatly enhanced largely because I was able to see and be treated by a high quality, modern Rheumatologist. Even if only for the purpose of a consultation it may be appropriate to visit with a Rheumatologist.

I wish you the very best and hope you find the answers that will assist you the most.

Thank you for this beautiful post. You have expressed what I have felt many times over two decades. I’ve had both breast cancer and RA. My cancer journey was met with lots of caring and understanding by my friends; but, RA, which, for me, is much more painful and difficult to live with, is barely noticed by them. They never say, “Oh, we’ll understand if you don’t make it to the party because you had an arthritis flare.” They never said that when I was undergoing treatment. They often commented how “gracefully” I went through surgery, six months of chemo and two months of radiation. Sure, a year of cancer treatments was no fun, but it wasn’t as bad as twenty five years of a painful, progressive, crippling disease. During chemo, I was pumped full of steroids so my RA disappeared. That was heavenly! Hard for a non-RA person to understand.

First let me apologize for not responding sooner. I wish I had a good excuse but unfortunately I do not. I hope you will forgive me.

I do think disease that so often appears invisible is difficult for people to relate too. I was once at a local office building that houses many doctors’ offices. I sat on a ledge next to a fountain and collapsed. As I came back around ‘with emt’s all around’ I heard a passerby remark that she felt it should be illegal to allow drunks out in public. I was having an insulin low what I didn’t know at the time was that a small part of what I was carrying fell in the fountain. It was good someone who knew what was happening walked by at the right moment to get me help. Despite the outcome, that lady who passed by as I was recovering will never know the truth of why I was sitting there and what she witnessed.

This troubled me for a long time. I had to resolve in my mind both my mistake (too much insulin, too few carbohydrates) but also what this unknown passerby said. It hurt for a long time. Years later I had to face something else. I had to get an electric cart at the local Target. The situation was that my hip was destroyed and I was waiting for surgery. I simply could not hardly walk let alone shop.

As I got the cart a fellow commented that gentleman do not use such items. For a second it flashed that comment hit my anger button. I am not what my wife calls a mans, man. I do alright but I believe I am better with thinking than doing. Somehow I think the male gene sort of passed me by. Well implying I was not a gentleman angered me because if I am anything I try to be a gentleman.

Well I almost lost it. But a fellow with the commenter said never mind him, he is an idiot. Somehow it defused the situation for me. I was able somehow to count the commenter for who his friend thought he was.

Why do people act like this and judge so quickly? I have no idea. Does this stuff still bother me? Yes always. But sometimes, I get to think back to target and that guy who bad mouthed me. I tried to keep in touch with who I am at heart: a husband, dad, grandfather and oh yes a gentleman (mostly).

Take care,, I am wishing you good thoughts and know we are not alone., there are many of us who know these things, your comments and hopefully my blog help others know we may struggle but we will overcome, after all what choice do we have?

Hi, really liked this post, it really is an invisible illness. I like the fact you said it can be a paradox. As a 20 year old, I feel guilt a lot. If I feel good for a few weeks I feel guilty that people ask how I am and I say I’m ok, I get paranoid that they think I’m faking it. And then the pain and swelling will appear again and I feel like maybe that’s how I should always be, it won’t ever properly go away and maybe I’m moaning too much. It’s a very difficult illness to understand in an individuals head.

I agree it is a very difficult illness for us to understand let alone those we interact with. After 15 years of having it, and the ups and downs including the really good times (like now) compared to the really ugly times, (maybe 6 months from now), I have to say that looking over my shoulder at others who might judge me, myself who is always judging me and my future acquiescence’s who will judge me is always the worst thing about RA. In many ways the pain is bearable, I mean what choice do we have? But the judgement is dreadful some days, I always feel like I want to correct it somehow. Unfortunately, i know I cannot so I have to endure it. If i could give myself one gift, it would be the gift of not listening to others who always seem to judge my health and in so doing judge me.

Best to you, and thank you for replying. I appreciate your (and all commentators) kind thoughts